This is my 1st post on this site..I have looked and read a lot on here!
My son Michael is a twin and is 3yrs old w/a PWS on his rt cheek, ear, neck, and extends into his hair line... When he was born we were told to wait a yr. to see if it faded, it did not. So we went to see a dermatologist in Nashville, TN. We set up a laser treatment but was denied by the ins comp, we had sent in an appeal & was denied..they said that the PWS is not affecting his health at this moment so it is not medically necessary to treat it at this time. But they said i could appeal it again...but I am not sure that they will ever change their mind. I didn't know if there were any organizations that helped with financial costs of these laser treatments or helped families fight ins companies. It makes no sense to me that some ins comp will cover it & others won't...it is just so frustrating!!Any advice is welcome!